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Saturday, January 2, 2016

My life has changed a lot since I first created this blog in 2011. I'm now working full-time, plus I'm now president of our library workers' union, a responsbility that is the equivalent of another part-time job. So I'm doing more than I have at any time since my initial diagnosis and recovery.

To stay on track and avoid debilitating crashes and setbacks, I must be very disciplined. I turn down most invitations, and I spend most free time on the couch. I joke that my life is three things: work, union, and couch. But it's mostly not a joke.

Despite this, my energy level has been surprisingly good. My pain and other symptoms have not lessened significantly.

Treatment Update

Here's what I've done for treatment since my last update.

- I continue to take 50 mgs of nortriptylene at night, and have been sleeping fairly well. I have horrible dry-mouth, and as my work involves a lot of speaking, I have cough drops (no sugar added Ricola) with me all the time. I find the dry mouth very annoying, but insomnia or non-restful sleeping is not an option.

- I stopped taking Exhilarin and GingkoRose, because I felt we couldn't afford all the supplements. Looking back at my old posts, I think I need to re-start at least the Exhilarin. My "fibro brain" has returned with a vengeance.

- I'm also taking Omega 3s from wild salmon fish oil, and CoQ10. These are for general cardiovascular health, but there is supposed to be a mental benefit, too.

- The acupuncture didn't reduce my pain, but it did reduce my temperature! I am still warmer than most people (have been all my life), but I'm no longer flushed and burning up all the time. Some time after completing the course of acupuncture, I wanted to have more, but the doctor had moved out of the area. I tried another doctor, and had the complete opposite results. Not only did the needles hurt, they produced no positive results, and I suffered nerve damage. At the site of one needle insertion on my hand, I have nearly constant itching. My conclusion is that acupuncture can have great results, but it's down to the individual practitioner. And how do you find someone whose technique will work for you?

Trying something completely different

Now for the big news: a therapist recommended that I try something called Eye Movement Desensitization and Reprocessing, known as EMDR. This has been shown to be useful in reducing PTSD symptoms... and she says there is a link between chronic pain conditions such as fibromyalgia and past trauma.

I came upon this through a roundabout way. I was having an increase in my anxiety, and asked my doctor for a refill of the clonazepam that I take occasionally. She felt I was taking them too often, and encouraged me to go on a daily anti-anxiety med (an SSRI) rather than an as-needed med.

I was very resistant to this at first, which is strange, since I have witnessed the life-saving (and relationship-saving) effects of anti-depressants and anti-anxiety medications, and I have encouraged many friends to try them. But for whatever reason, I was reluctant to make this change for myself.

But clonezapam and other as-needed sleep/pain/anxiety meds are habit forming. Your body builds up a tolerance very quickly, and also "forgets" how to not have anxiety without the meds. In other words, they're addictive, and you soon need them to feel normal. With my highly addictive personality, and a family history of prescription substance abuse, I'm a good candidate for trouble.

Eventually I gave in and tried an SSRI... and my anxiety has disappeared. I just feel steady, and normal, and in-the-moment. Only after that change did I realize that I had been in a constant state of anxiety. That feeling had become the new normal, and I was only noticing the anxiety when it spiked. So: great results. (The only side effect is yet more dry-mouth.)

My doctor also suggested going for some short-term therapy, possibly cognitive-behaviour therapy, and she suggested that I use my Employee Assistance Plan (EAP) to do. This is the first time I've ever had EAP. It's supposed to be a great benefit - it's confidential, and it's free - so I thought, why not try it. The intake person was great, and found a therapist 5 minutes from my home.

I arrived at the therapist's office all set to try some superficial, intellectual exercise. I thought, certainly I don't need anything in-depth. I've done all that already. I'm all "done". Everything is in its place. But hey, if everything is right in my world, why do I still wake up with night terrors?

These therapy sessions turned out to be anything but superficial and intellectual. In fact, they were kind of grueling. Poking the hornet's nest of PTSD is not easy. It seems absolutely ridiculous - it seems impossible - that one incident, no matter how horrible, could still be affecting me more than 30 years later! But that's wishful thinking. Trauma re-wires your brain. The extreme surge of adrenaline and other neurotransmitters that flood your system from trauma permanently alter your brain chemistry. And comparing the trauma I lived through to other people's trauma is a dead end. Dr. Dennis Charney, a psychiatrist at Yale and director of clinical neuroscience at the National Center for Post-Traumatic Stress Disorder says:

It does not matter if it was the incessant terror of combat, torture or repeated abuse in childhood, or a one-time experience, like being trapped in a hurricane or almost dying in an auto accident. All uncontrollable stress can have the same biological impact.

Now add this fact to the mix: fibromyalgia and other chronic-pain disorders are strongly associated with trauma and with PTSD. I suppose I was vaguely aware of this, but this therapist emphasized it more than I ever had.

And that's what led me to investigate EMDR. The therapist said it's been documented to reduce PTSD and chronic pain symptoms in many people. I really don't want to work on past trauma - ever again - but if there's a chance of reducing pain, I will try it.

I've decided to wait a while, as this is the wrong time for me to begin something that might be disruptive or frightening. But I am planning on looking into it, and I will probably try it.

Wednesday, January 16, 2013

I decided to try acupuncture again. Because we have a little insurance coverage per calendar year, I purposely began in December 2012, used the full limit for that year, then continued in January 2013 with the coverage for the new year.

For many sessions, I felt no change. The doctor said that was because I've experienced the symptoms for such a long time. But after four or five sessions, there was a definite change. First I felt much cooler for the first time in many years. That was the first noticeable difference. Then I noticed a definite increase in energy, physically and mentally. Then finally, there was a decrease in pain.

I told the doctor that my insurance coverage would soon end. To my amazement, he said that was fine, because I wouldn't need treatment anymore! Unlike in Western medicine, he said, where you take medication forever or the symtpoms returns, TCM treats the underlying imbalance, the root of the problem. It's difficult for me to grasp, but for now, I feel good and I'm going with it.

Monday, January 9, 2012

A few weeks ago, my sleep started deteriorating. I started waking up during the night again, three, four, five times a night or more, sleeping lightly and non-restfully. At first I thought it was momentary anxiety or some other issue, but it continued for days and then weeks. It wasn't long before my pain began to increase. That's no surprise, as fibromyalgia pain is closely linked to non-restful sleep.

I guess 40 milligrams of nortriptylene are no longer doing the job. I've taken this dosage since the late 1990s, so this was a surprise.

I talked to my doctor and suggested that I start increasing the dosage and see how I feel in the morning. She agreed that was a good start. She also mentioned that if increasing the nortriptylene doesn't cut it, I could try trazadone. Meanwhile, I have the nortrip in 10 milligram capsules, so I'll try adding another 10 to start.

Friday, December 16, 2011

When I have severe flare-ups that include pretty bad all-over body pain, I take a prescription painkiller. When I was first diagnosed, the rheumatologist prescribed Ultram (tramadol). Later, my family doctor gave me Tylenol 3, which is acetaminophen (paracetamol in Europe) plus codeine. I take these as needed, which for me comes out less than six pills a year. If your pain requires more medication, you might be concerned about taking painkillers. But to me it's a simple equation: use every available tool.

Menstrual cycle

I used to have very severe fibro crashes when I had my period. My periods had become extremely painful from large - and growing - uterine fibroids. (Fibroids are very common benign growths.) The fibromyalgia plus horrible periods created a monthly nightmare. I would lose three days out of every month with cramps, body pain, mental confusion, and depression.

In 1998, I had a partial hysterectomy, which means the uterus was removed but the cervix and ovaries were left intact. I was completely certain that I didn't want children - I believe my partner had already had his vasectomy, or soon would - so this was not a difficult or emotional decision for me.

No longer having periods was so wonderful! It was incredibly liberating to be free of the monthly pain and emotional turmoil. And... my fibro pain improved, too. I don't know what the connection is, but there was an almost instant improvement.

* * * *

It's strange to think back on that time, before my symptoms were under control. If I ever feel unhappy about my limitations, I only have to think of how miserable I was then. I do less now, but I feel so much better. It's worth it.

Saturday, November 5, 2011

This blog describes the treatments and strategies I use to cope with fibromyalgia and to reduce the symptoms as much as possible. Everything I write in this blog is based solely on my personal experience.

Like many people with fibromyalgia, I was misdiagnosed - and consequently followed the wrong course of treatment - for many years. Perhaps you've heard enough diagnosis stories for one lifetime, and you're looking only for information on treatments and strategies. If that's the case, read on. If you are interested in my misdiagnosis and diagnosis, please click here.

A few things to note about the tools and strategies listed below.

1. They all work together. None of them alone is sufficient; if I omit any piece, I pay a price in pain and fatigue. I think there's a synergistic effect.

2. I added each of these treatments separately, over a very long period of time, changing only one variable at a time.

3. I have experimented with reducing or cutting out each of them (sometimes unintentionally) at various times, and have proven to myself that each piece works for me.

What helps

Prescription medication

People with fibromyalgia tend to have disruptive sleep patterns. This may take the form of outright insomnia, or what is referred to as "non-restful sleep," where the brain never enters a deep-sleep mode. If you wake up repeatedly throughout the night, and what sleep you do get feels light and shallow, then your joint pain, muscle pain, and daily fatigue may be linked to this disordered sleep pattern.

I take 40 milligrams of nortriptylene every night before bed. In a higher dose, this medication is an anti-depressant. At this lower dose, it induces sleep and changes the brain's patterns during sleep.

However, if you start taking this drug at the 40 or 50 milligram dose, it is likely to leave you feeling groggy and hungover in the morning. (More about this on the diagnosis page.) I began using it in a liquid form, so I could adjust the dosage by tiny increments. I began with 5 milligrams a night, did that for about a week or so to let my body adjust. Then I bumped it up to 7 milligrams, took that for a week, then increased it to 10, then 12, and so on.

I was searching for the maximum dosage I could take without experiencing grogginess in the morning. Forty milligrams was my threshold. I take this every night before bed.

I am not exaggerating when I say that this utterly changed my life. I thought it was normal to wake up five, six, seven times a night, and to wake up exhausted. I didn't know what it felt like to wake up relaxed and refreshed - and I didn't know the toll it was taking.

I also take a low dose of Eltroxin, or Synthroid (generic: levothyroxine), synthetic thryroid hormone. My thyroid was borderline hypothyroid (i.e., slow) and my doctor tried this as an experiment, one that I was happy to try. I began with a .025 micrograms and increased it to .05. If you think this may apply to you, make sure your doctor checks all the thyroid numbers, not just T3 and T4, but TSH and other related numbers.

My current doctor would not have done this, but I was fortunate to have someone willing to go outside the norms of treatment.

I also have osteoarthritis in my hands, knees, and several other joints. I take Celebrex for this. I'm told that this cannot also help fibromyalgia pain, because that is not caused by inflammation. I don't know if this is true or not.

I also take some other medication for high blood pressure, and I use Metamucil (soluble fibre) to control my cholesterol, which is naturally high and resistant to dietary changes and exercise. Those are not fibro-related.

Supplements

I take a supplement called Fibroplex, a proprietary blend made by Metagenics. This was recommended to me by a nutritionist, and it reduces both pain and fatigue. Fibroplex contains B vitamins, magnesium, maganese, and malic acid. I began by taking 2 tablets, 4 times a day, for a couple of months, then gradually reduced the dosage. With less than 2 tablets twice a day, fatigue and pain returned, so I set that as my threshold.

Malic acid is difficult to find on its own, and it works better in conjunction with the other ingredients. In addition, Metagenics produces very high quality nutriceuticals, and tests its products according to pharmaceutical standards. There are many less expensive brands, but you cannot be sure of what's in the product; it may not even contain the ingredients listed on the label, or the strength and quality may vary. To me, it's a false bargain to try to save money by finding a cheaper substitute for Fibroplex.

I also take two herbal supplements to increase mental functioning: bacopa and ginkgo. You can find these anywhere, but I use Metagenics' proprietary blends: Exhilarin, which contains bacopa, basil, and other herbs, and GingkoRose, which contains gingko biloba and rosemary. It's not a miracle in a jar, but it does improve my mental clarity.

For arthritis, I also take glucosamine and chondroitin, and this is one piece I recommend to anyone with osteoarthritis. It's strengthened and stabilized my joints considerably, and I've seen it work on so many people and animals, that to me it's a given.

Lifestyle changes

This is the tough part. It's a lot easier to take pills than it is to develop new habits, especially habits that curtail your activity. But I learned the hard way - over and over and over. (More about this on the recovery page.) Finally I decided to accept my own limitations. The way I think of it, everyone has limitations, and many people have way more limitations than I do. We can each only do what we can do.

First, I maintain a strict sleep routine. I go to sleep at about the same time every night, and make sure I get a minimum number of hours of sleep. But a healthy fibromyalgia sleep regimen means more than just a regular bedtime. It means not doing "just one more thing" before bed - not checking email at 10:00 at night, or starting a movie at 9:00, or staying up for a west-coast baseball game, or deciding midnight is a good time to do the laundry. If I want to be asleep no later than 11:30, I am winding down at 10:00 and in bed by 11:00. No exceptions. If I have to be up earlier than usual, then I have to be asleep earlier than usual, too. No exceptions.

Even more importantly, I maintain "white space" in my calendar. Before I got sick, I was always busy. I had a packed calendar every day, and I thought that was perfectly reasonable. It was a hard habit to break.

Now I build in down-time and I don't allow it to fill up. How much I can do depends on what time of my illness and recovery period we're talking about. Right now I'm doing really well, and have managed to go to graduate school part-time, work part-time and do some activism. But despite what that may sound like, I am not busy every moment and I build in plenty of down-time.

There was a time when I could schedule one thing per day, and that was it. If I had a dentist appointment, I went to the dentist, and I came home, and that was it for the day. As I gained strength and felt better, I began to schedule one evening activity per week. These days, I can be out two evenings a week, but one is better, and never more than two, and ideally never two evenings in a row. If I'm out two evenings in a row, then the day in the middle must be predominantly down-time.

Before I fully understood and accepted these limitations, I periodically experienced flare-ups that I call "fibro crashes", which would put me out of commission for up to five days. Gradually, I crashed less frequently, the crashes would pass more quickly, my bounce-back time would be faster. So instead of crashing every month for three days, I would crash every six weeks, then every two months, then maybe four times a year, and instead of each episode lasting three days, it would last 48 hours, then 24 hours, then I'd wake up feeling like shit, but by 5:00 p.m. I'd feel like myself again.

Maintaining a schedule that is less active than you want to be is a huge challenge. It requires a personal discipline which you may apply to everything else in your life except your health. For me, it helps to remember that everyone has limitations. I also rationalize by reminding myself that no one can do everything and be everywhere. It's not possible. So since I have to draw the line somewhere, it might as well be for my own health and well-being.

From my own experience and my observations of others, I've come to believe this: if you have fibromyalgia and you won't regulate your activities, and simply do less, your chances of feeling healthy and well are greatly reduced.

It sucks. I know that. But feeling better, having less pain and less fatigue, enjoying your life more, is a great reward.

Acupuncture

I've tried two kinds of acupuncture. One reduced my trigger-point pain but was unsustainable. The other tremendously increased my mental clarity (decreased my foggy-brain symptoms) but I couldn't afford to continue it.

In my first experience with acupuncture, a physiotherapist inserted needles to very briefly tap a trigger point. It caused a brief but intense pain, and some involuntary movement (a flinch). After the treatment, I would take a bath in Epsom salts. Then for three or four days after, I would have a noticeable decrease in pain and sensitivity at the site of the needle.

The therapist felt that if I had these treatments regularly, the effects would last longer and I could eventually cut back to a maintenance schedule.

But I have at least a dozen trigger points, often closer to 20. I couldn't tolerate more than four or five of these needles per session. In addition, the clinic was not near my home, there was a lot of waiting time involved, and having to go home and get in the bath made it an all-day affair - an unreasonable time commitment. But even without those factors - if I had found a thearpist closer to home, on a better schedule, for example - this form of treatment seemed impractical. It was too painful and would entail too many treatments.

My second experience with acupuncture was more traditional. A Chinese doctor performed the more common all-over acupuncture and also gave me herbs. After about five treatments, I began to have a marked increase in mental clarity. It was astonishing. My brain felt like it used to, when I was younger. (This also made me sad, as I realized how much I have lost.) Unfortunately, there is simply no way I can afford acupuncture on a regular basis, so I had to stop. If my financial situation changes significantly, I would definitely resume these treatments.

The same doctor believed that with enough treatments, my pain would also be reduced. I don't know whether or not that would have happened, but I was definitely willing to try. Treatments were completely painless and very relaxing.

What hurts

Not getting enough sleep.

Being too busy.

In the summer of 2010, I went through a period of being overly busy and not having enough rest time, a function of some activism I was involved with. When classes started in September, this activism had a few weeks to go until a big deadline. I planned to work until that deadline, despite being in school, then cut back to previous levels of activity.

The deadline turned into a crisis, and instead of cutting back, I just continued, even escalated.

For the first time in years - maybe six or seven years - I felt a full-blown crash coming on. I told my partner, "I feel like I'm rolling down a hill, going faster and faster, and the only way I'm going to stop is when I hit the bottom of the hill. I know I'm going to crash at the bottom but I can't seem to stop." We talked about it, and I knew what I had to do: I had to cut out activism for a while. Work was non-negotiable. School, also non-negotiable. There was only one way to get more rest. But I was unwilling to do it.

My mother said to me, "You know what you have to do. No one else can do this for you. Only you can stop yourself. Only you can decide to take care of yourself."

I knew they were both right, but I couldn't seem to give up. The crisis my group was going through was such a bitter disappointment, such a terrible loss, and my way of coping was to run around doing everything I possibly could, as if I could fix it. But there was no fixing it, and it felt like there was no stopping myself, either.

I finally did wake up and realize I had to cut back, but it was too late. (Although if I had let it go on even longer, I probably would have ended up in the hospital.) It was the worst crash I had had in seven years. I was completely out of commission for three days, then gradually returned to normal over a week. It was a full two weeks before I felt fully recovered.

A fibro crash feels something like the worst hangover you've ever had, or a flu virus. My whole body is wracked with pain, and so tender that even my clothes touching my body hurts. My head feels completely fuzzy and thick. It's impossible to think or concentrate or focus on anything. One thing about crashes: they're great incentive to take care of myself.

What hasn't helped

Dietary changes. I've read many things about avoiding certain foods that supposedly cause fibromyalgia symptoms. Nothing along those lines has ever worked for me, and I no longer try that route. I tend to think that these treatments come from people who believe that certain foods are inherently unhealthy. For example, some people believe dairy is bad and that removing dairy from the diet will cure what ails you, and they apply this to a wide range of health conditions. But, as always, this is only my own experience. Yours may be entirely different.

I've done several cleanses (Metagenics again) and although they had excellent health and wellness benefits in general, I did not find a reduction in fibro symptoms.

Over the years, I may have tried other treatments that didn't work, that I now can't remember. If I think of anything, I'll post an update.